Downside Up celebrates its birthday

26 years of good deeds: The Downside Up Foundation celebrates its birthday


CSO sector: 14.09.2023


The Downside Up Foundation was established in September 1997, providing psychological, educational and social support to families who have a child with Down Syndrome.


Having begun its work offering professional support for 18 Moscow families with young children, the Foundation has gradually become one of the main SONGOs implementing programmes that provide long-term multi-disciplinary help for families with a Down Syndrome child.


Initial steps


The history of Downside Up began when a girl with Down Syndrome was born into the family of an Englishman, Jeremy Barnes, who was working in Russia at the time. Finding a serious lack of information and specialised support for families in Russia, Barnes, together with several Russian colleagues, decided to set up a charitable foundation to help address this anomaly.


A new CSO was registered in Russia in autumn 1997 – the Downside Up Foundation – which started publishing a magazine for parents called “Take a Step”.


Downside UP quickly established a psychological support service for families, as well as working with pre-school institutions that could accept Down Syndrome pupils. The Foundation’s staff were happy to share their knowledge and practical experience with pre-school teachers.


Downside Up now


A family-oriented model has developed over the years which has helped the Foundation to support people from the cradle through to adulthood and employment. Now, people with Down Syndrome are receiving training at the Skolkovo Management School in Moscow with support from the Foundation. Several workshops specially designed for people with mental disabilities have been set up in various cities.


The Foundation’s staff have translated and published 30 guidance manuals for specialists and parents. It also produces two periodicals: for the past 26 years, the magazine for parents “Take a Step” has come out twice a year, with the scientific and practical magazine for specialists “Downside Up: 21st Century” published for the last 15 years.


Downside Up is particularly involved in digital projects. The My Site platform is the first social network for people with Down Syndrome where they can read news and socialise with other people. Logobank, an interactive online stimulator for pre-school children’s speech development, contains 12 sections with tasks aimed at different ability levels which enables parents to work with their children on their own, with the help of a mentor from the Foundation.


Another project is a digital version of the Diagnostic Tables for Young Children “Development Day” which comprises 11 adapted paediatric tables. By using this tool, parents can not only determine the level of the individual skills progression of their child, but also gain an overall picture of his or her development.


Parent associations have sprung up all over Russia with the active support and participation of the Foundation. Other organisations have also been established to help people with Down Syndrome, including the “Love Syndrome” charity created by the Foundation.


A few years ago, the Foundation and Love Syndrome, prepared a Declaration of Ethical Principles for Services to People with Mental Disabilities, which aims to change the way people with Down Syndrome are treated as employees and as consumers of services.


Global changes


Over the years, the Foundation has initiated and inspired important social changes in the lives of people with Down Syndrome thanks to the efforts of its staff and partners*


  • 11,362 families receive psychological, educational and social support;


  • 8,312 specialists have taken part in training events and improved their professional skills and qualifications;


  • The Downside Up Foundation’s information and guidance website receives over 54,000 visitors from Russia and other countries every month;


  • 35,748 people have become supporters of the Foundation, as well as subscribers to its social networks;


  • 3,934 information and guidance materials are available in the Foundation’s electronic library.


There have also been changes in the world view of parents. In July this year, Downside Up conducted a survey among its stakeholders to assess the contribution of Downside Up and Love Syndrome in acquiring and harnessing knowledge about their children’s particular characteristics. Here are some results from the research:


  • 46% of parents acknowledged Downside Up’s contribution to the development of their children’s social skills. Parents are also increasingly appreciative of the Foundation’s role in developing qualities such as the ability of their child to form their own views, a sense of responsibility, self-control, being able to see things through to the end and problem-solving;


  • More than 60% of parents have become more aware of how they can help their child effectively, to feel confident in their own abilities, to confident that their child can be independent and become more involved in their child’s development;
  • The average contribution of Downside Up and Love Syndrome to parents’ knowledge of their children’s development is 64 per cent. Parents of children from 0 to 3 years of age and adults over 18 rated this contribution the highest;


  • 46% of families acknowledged the contribution of Downside Up to the development of their family’s wellbeing. They reported that the Foundation’s efforts had improved the relationship between them and their child, as well as enhancing the general atmosphere within the family;


  • 60% of families said that Downside Up had contributed in developing their personal readiness to look after their child’s interests.


Downside Up’s work is recognised by the professional community and a wide cross-section of the public. It is also acknowledged as a national and international source of expertise for the development, education and upbringing of Down Syndrome children of early, pre-school and school age.


*according to monitoring carried out in August this year





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